Last month we launched a Survey on Loeys-Dietz syndrometo help us get a better sense of the number of people with Loeys-Dietz and their ages. Thanks for all the responses so far!

If you haven't yet participated, here's why you should. Knowing who we are as a patient population can:

help the LDSF better tailor its educational resources and outreach,

arm researchers with valuable population estimates, and

provide a sense of longevity beyond the 26 years mentioned in the first article describing Loeys-Dietz, which counted on a very small sample of patients.

All that for just three minutes of your time. Click here to get started.

MEET NICOLE

As we were leaving Children's Hospital Los Angeles after learning Nicole was to have emergency surgery the next day to replace her two broken spinal rods, Nicole looked somber and pensive. She said to me "Mom, I am so sorry that you have to go through this once again. I can't believe another holiday will be spent in the hospital and we have to cancel another family vacation. I feel like I ruin everything." As I blinked back tears, I first thought, "Wow she is growing up and thinking about how her challenges are impacting others"; then I felt so sad that she will never have the carefree healthy childhood you wish for your child. My response to Nicole's comment was that the joy she gives our family with her fun, sparkly personality far outweighs her medical challenges. READ MORE

OPPORTUNITIES TO TAKE HEART

Julie and Chris Wilson's "Move your Feet for Loeys-Dietz"

In honor of their son Conner, Julie and Chris are part of a relay team in the Pittsburg Marathon, raising awareness and support for the LDSF. Support their cause by heading over to their crowdrise page. All proceeds benefit the LDSF.

Alexa Rodriguez's "Move your Feet for Loeys-Dietz"

In honor of her sister, Sophia Maggio, who was recently diagnosed with Loeys-Dietz, Alexa hopes to raise awareness and funds to support research. You can help support her cause by heading over to her crowdrise page. All proceeds benefit the LDSF.

Save-the-date:

June 20,

skeet shooting in Hudson, Wisconsin

WITH THANKS!

To the hundreds of donors listed in our 2014 Annual Report, to the many others who give anonymously, thank you for your generosity. Your contributions helped us deliver what we did in 2014 and inspires us as we plan ahead.

Surfing the internet? Ordering off Amazon? Looking for some unique jewelry? Did you know you can help generate funds for the LDSF with things you already do? Take a moment to see how you can help us raise funds everyday. Learn how to help the LDSF.